Afraid to tell neurologist/doctors how badly my situation is affecting me.

[Trying1989]

I have a wide array of neurological symptoms and some non-neurological symptoms. Excruciating headaches, balance issues, poor coordination, cognitive difficulties, twitching fingers, shaky hands, phantom smells, dizziness, peeing every about 15 minutes, occasional numbness, difficulty enunciating words, sensitivity to certain types of lighting, ringing in my ears..I'm sure I'm forgetting some, but you get the idea.

I've been to a lot of doctors. Two different neurologists, I don't even know how many general practitioners, a cardiologist, an ENT, three different chiropractors, two psychologists, some alternative health type of people.

None of them have been able to help me, nor have I gotten the impression that any of them care to help me. They all run the typical tests on me like MRIs, blood tests, CAT scans, and inner ear testing, but then once those tests show up normal, they just send me home and act like I should just be grateful that they didn't find anything. I mean, I'm glad I don't have a bulging aneurysm or brain cancer or something, but the absence of a tumor, etc. doesn't make living with these issues any easier. It doesn't change the fact that I'm always afraid to leave my house because it's scary to drive when you're brain foggy and off-balanced and embarrassing to walk inside of a public place while you can barely focus on anything you're doing or while you're walking up steps clinging onto the handrail because you feel like you're going to fall if you let go for a second. It doesn't change the fact that I'm at an age where I should be starting my career and finding my independence, and instead I'm stuck in my dad's house. On top of that, because so many doctors have told me I'm normal, my family members are pretty much cruel to me because they think I'm making stuff up and they're embarrassed by me.

Because all of this has been controlling my life for several years now, I've fallen into a pretty bad depression, and it keeps getting worse. I'm not suicidal, but sometimes I'm afraid that I'd eventually get to that place because it just keeps getting worse and worse. I don't remember the last time I made it throughout a day without crying at least 5 times. Like, I can't keep living like this; this isn't living at all, it's just surviving.

I need somebody to do something to help me instead of just sending me home to suffer for another 6 months until my next appointment. Or, at the very least, I need someone to be upfront with me and tell me there's nothing that can be done to help me so that I can let go of this false hope that just maybe the next doctor's visit will be different and so that I can quit spending money I don't have on doctors.

I wonder if maybe I told a doctor just how messed up this is all making me (if they'd even listen...doctors are always so rushed), they'd be willing to try and think outside the box for me. I'm scared to even go into it, though, because I'm afraid they'd force me to go to a psychiatric ward or something...they made my mom go to one when she was really sick, and it destroyed her...she was never the same after that.

I just don't know what to do. Input?

[JodyDFB]

Boy, do I (kind of) know how you feel!

I am much older than you (based on the notion 1989 is your birth year) so I have an additional 25 years of history to demonstrate that I don't imagine medical problems, and that I'm not a nervous person prone to anxiety.  I'm quite the opposite.  

When I came down with a sudden-onset illness 9 months ago, the best I received from doctors was a rather apathetic, "I don't know," or slightly worse, 'What do you want me to do about it?'  Several doctors and virtually all the nurses I've seen have either stated, or implied, that I'm imagining it all.  

Here's the thing...  I am confident enough to know I'm not imagining it.  And that's not just to say I'm not, but with a lifetime of proof that I don't imagine or exaggerate ailments, combined with a whole life philosophy that tends to eschew the idea of focusing on illness, instead focusing on healthy eating, exercise, and general happiness as illness prevention.  

Telling everyone (esp. without test results or considering the person's medical history) they're imagining their ailments is the lazy doctor's way out.  It's entirely possible that some, maybe even many, people ARE imaging their illnesses.  But it is unethical, unprofessional, and unfair to simply assume this, right from the start.

When a doctor says something ridiculous to me, he/she loses credibility with me, and I move on.  

I found a GP (had gone many years with no need for a doctor), and he is amiable enough to do what I ask.  So far, thankfully, all tests have come back normal.  My symptoms have improved dramatically, esp. over the past 2 months, and I'm only left with a few, pesky issues that, in the absence of any medical insight, I'm hoping will similarly resolve on their own.

I have no advice for you, except to know yourself, be honest with yourself, and take an active role in improving your situation where you can.  For instance, I'd already been doing daily exercise, eating extremely healthy, and doing daily relaxation yoga, for years, as part of my uber-healthy, fantastic life strategy.  ;)  (I have a fantastic life, most of which is the result of the precise choices I made, along the way.)  So, when some failure would suggest I'm tense or anxious, I would point to the fact I have no history of anxiety, and, in fact, am very contented and happy, and have been doing relaxation yoga every day, for ages.  

Like you, I could handily discredit some theories, by going back to the beginning of my illness.  I had a full belly, was quietly sitting on my couch with my spectacular husband at my side, playing, of all things, a game of solitaire on my iPad, when the first episode occurred.  So, any attempts to theorize a cause that doesn't coincide with my previous nearly 50 years of excellent health, good spirits, ample personal accomplishments, healthy lifestyle, happy home life, astonishing lack of real stresses, etc., etc., was a theory that just wasn't credible.

So, I leave behind those who essentially blame me for my symptoms, and know that I am strong enough, and committed enough to find the cause and/or endure the symptoms.  I do everything I can to make sure I'm in the best possible position to recover from whatever this is, by eating healthy, exercising, maintaining a positive outlook, and not betraying myself.

Best of luck.  Sorry I can't help you with your illness.

[alienshadow]

Hey I wasnt kocking you I was saying I feel the same way. No answers get the run around blah blah blah.... But from all my test being normal I have to believe and listen at some point.. Even if I dont think that.. Sorry I offended you I didnt mean it like that..

[Trying1989]

Honestly, nevermind if the responders are just going to tell me it's a psychological problem. I've already been to psychologists as I stated, and I get enough of that stuff from my family members. Really tired of trying to reach out for help and instead being told I'm just mentally ill. It's like there's nowhere I can turn and be taken seriously.

[Trying1989]

I didn't have anxiety or depression when the symptoms started. I do now. They're not the causes of my symptoms.

[alienshadow]

Just wondering if your doctors have suggested Anxiety/ Depression?? I am dealing with issues as well and have been for 18 months. No answers but they are all telling me I have Health Anxiety and I am in therapy. I dont have the answers for you but anxiety should be considered you sound just like me.. And I bet Dr. Google hasnt helped things?